Sorry to hear about this. I think it is not because of your j-pouch itself, but the reason you have it. Specifically, the history of colon cancer. That puts you at higher risk of uterine cancer. Was your cancer UC related or did you have the familial type?

 

Hope things work out well for you and they are on top of this in time.

 

Jan

Mine was UC related as far as I know- well, I was told my sister wasn't at risk so I suspect it was UC related?

 

I had just started to get somewhere with my pouch, finally worked out what and when I could eat and had started to get some better sleep with only one night time bathroom trip. I am so p'd off right now!

I don't blame you! I'd be mad and frustrated too. Try to be kind to yourself and do whatever you need to stay calm and focused though. Sounds like there may be more to come

 

Take care.

 

Jan

Thanks for your input Jan. I'm so annoyed with myself for missing the smears. My. GP was very sensible and said its a waste of energy beating myself up now, but with all the other tests and follow ups I had it would have been just one more thing- no trouble at all really. 

I wasn't told there was an increased risk of uterine cancer either

 

My surgeon was adamant that it was caught early ( the colon cancer) and removed loads and loads of lymph nodes which were clear- I didn't need chemo. so I sort of feel that is this is cancer, it isn't related to my other cancer.

 

oh well, at least I am being seen relatively quickly !!

That is a very good thing that your colon cancer was caught early. So mabe these two are not related at all, and it was just random bad luck. I suppose that just having one cancer puts you at risk for others. Probably does not matter at this point how this got there. 

 

Jan

UKSue, now this is an area I know!  See a GYN immediately.  I'm not sure how it works in the UK, but in the States, for the most part we see GYN's for female needs.  I had cervical cancer 30 years ago.  Everything that could go wrong did.  I won't bore you with the details.  But at this point I would not take the word of a GP.  It could be displasia.  They might not know the difference.  the samples need to be graded.  You need to know what the grade is.  I forget all the grades but for cervical displasia it something like N1, N2, N3.  CIN, CIS.  you said they did a colposcopy.  That can give you a pretty good idea of what is going on.  My doctor saw with the scope that I had cancer.  So find those slides and don't do a thing until you get the full story and understand it!  I've been down this road, so if I can help in anyway, please PM me.

 

dianne

Hi Dianne,

 

I don't one think I explained myself very well: I am having my first colposcopy tomorrow, I have only had a smear previously. It was my GP who arranged this urgent colposcopy tomorrow. I certainly will be asking lots of questions and trying to avoid delays in anynecessary   treatment, thank you.

Sue, don't worry about the scope.  It's fairly easy and does not hurt.  But seriously,meet a GYN.  This can be a serious issue.  Fortunately cervical cancer is slow growing.  they will most likely do what is called a cone biopsy if the test comes back CIS or more.  If it is CIN, depending the level of displasia they will most likely let it be.  The cone biopsy is done in the OR and it is exactly what it sounds like.  It was one of the easiest surgeries I ever had.  I've had over 22 major surgeries, with most of them being gynecologic.  

 

Please se let me know how you make out.

 

dianne

 

Thanks for your interest Dianne. It is a Gyn registrar who is performing my colposcopy and I then have a clinic appointment with the consultant gynae next Tuesday. I will be there in a couple of hours and hopefully will know more after the scope. Thanks again.

I thought I would update. I had my colposcopy and it was carried out by an extremely experienced gynae consultant. He immediately pointed out a tumour which he said will 99.9% be cancer as there isn't anything else it is likely to be. He feels it looks localised and I may get away with just a cone biopsy or hysterectomy if nothing has spread. He has said I was not at any greater risk from my previous cancer as it didn't involve the rectum and was colitis - associated.

I am having an MRI on Thursday and they are trying to offer me the earliest possible cone biopsy under GA so they can check my rectum and bladder and get the largest possible margin on the cone biopsy. I have been told that should be within the next week.

If things are worse than he anticipates he thinks I will be referred to one of the London hospitals -St Barts- as they would be much more experienced dealing with someone with my history, J pouch etc. obviously the most important thing to me so to survive for my kids but I hope I do retain my j pouch if the worst comes to the worst

I have to say that once again, my experience with our NHS here has been excellent. I had an oncology nurse on the phone to me within 30 minutes of me getting home from my colposcopy appointment with my MRI appointment and she has also organised a prescription for a mild sedative as I am very claustrophobic. The hospital I went to has had some dreadful press lately,which doesn't give you much confidence!- however I always like to take as I find and my experience has been A1.

 

finally the the consultant said he didn't know where the nurse got her information about j pouch and smear results. He said it's very misleading and I should go back and tell her so (but  I'm not gong in there to tell a nurse she is wrong!)

My guess the nurse may have been thinking Lynch syndrome.  Your case doesn't sound like that though.  Heal well and keep us updated.

I agree. She probably got her wires crossed, assuming all colon cancer is the same. But, overall, any cancer diagnosis sort puts you at higher risk for another cancer, just like UC puts you at risk for other autoimmune diseases. I guess it just highlights your inate flaws.

 

Nevertheless, it sounds like you got a first rate consultant in a quick time frame, and that is what matters! Looks like things are going in your favor so far.

 

Jan